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Getting involved in Research – The EDGI Study

What is EDGI?

The Eating Disorders Genetics Initiative (EDGI) is the UK’s largest ever genetic research project into eating disorders. The aim is to collect the psychological, medical, and genetic information of 10,000 people with experience of any eating disorder. This will help us to better understand the role our genes and environment play on the development and treatment of these illnesses. EDGI is part of an international collaboration, with many countries coming together as part of the same initiative.

How can I get involved?

We can only reach our goal with your support – we need thousands of participants to contribute to this cause. Every single person counts. You can sign up or get more information on their website.

There are four steps to joining EDGI*:

  1. Register through the website and read the information sheet
  2. Provide consent
  3. Complete a ~30 minute questionnaire to see if you are eligible. When completing the questionnaire, please make sure you answer the question:  Did you hear about the GLAD Study through any NHS Trust, GP or any other healthcare provider? ‘Yes’ and select ‘Forward Thinking Birmingham’
  4. Once received, complete your saliva DNA kit and return via post

*Please note you do not need to have received a diagnosis or treatment in order to take part, and you do not need to tell your healthcare provider (all your information is confidential and packaging is discreet and free)

What are the wider implications of EDGI?

A deeper understanding of eating disorders means we will be better equipped to help those who are experiencing these illnesses. EDGI is also an important information resource that enables the efficient recontacting of volunteers for further research. For too long, eating disorders have been stigmatised by society, underrepresented in mental health research, and overlooked by research funding bodies. Together with your help, we want to change this.

What are the latest findings?

Eating disorders are just as likely to start in adulthood as childhood, new EDGI report finds

In October 2021, EDGI released a new report which found that eating disorders are just as likely to start in adulthood as childhood. Specifically, over half of people with eating disorders first experience symptoms of binge eating or low weight as adults, while over 39% of people first recognise bulimia symptoms over the age of 18.

You can read the full ‘Age of Onset’ report here.

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